A big thank you to the ESPCF members who responded to our request for feedback last month about the Pathological Demand Avoidance (PDA) position statement.
The statement was due its yearly review by the Autism Pathway Review and Implementation Group (APRIG), which is made up of education and health professionals, and parent carer representatives. The group agreed that several updates to the statement would be helpful, so a working group was formed. We collated your responses, along with relevant feedback from families given to ESPCF more widely (all anonymised), and presented this to this working group.
The position of the PDA statement has not changed, so please don’t worry. PDA is still recognised and there is no intention of this changing.
To confirm, the position of the current statement, and the proposed updated version, remains that although PDA still does not yet appear as a separate diagnostic condition in nationally and internationally recognised diagnostic manuals (such as the DSM-V), so cannot be made as a separate diagnosis, it can be recognised and described within an assessment report when a child is being assessed for autism.
Part of this review is looking at updating the information about what a PDA profile might look like and how to support PDA children and young people, to keep pace with ever-increasing knowledge and research of the condition. Your feedback suggested including links to the PDA Society, for its wealth of knowledge, information, and lived experience, as well as the need to include information about the more internal and/or masked or variable presentations of PDA. These suggestions have been fully accepted by the working group, who are in agreement that these are important points to include.
The original position statement was co-produced and published in September 2020 by ESPCF, ISEND (now known as Education East Sussex) and East Sussex Community Paediatrics. We’re pleased that this current review process is also genuinely co-productive, with parent carer voice being equally valued throughout, and it’s great to be working with some passionate practitioners, including a clinical psychologist, consultant paediatrician and educational psychologist, as well as a senior manager from within Education East Sussex.
CAMHS (Child and Adolescent Mental Health Service) practitioners were not involved with the original statement and all members of the working group were keen to involve them in this review, with a view to producing one position statement for everyone. CAMHS have been contacted and are keen to contribute to the position statement and align the position across all agencies. They will be reviewing the updated draft and joining our next meeting.
We hope the statement will help to empower families, as well as schools or other services, so that PDA is better understood and results in children and young people’s needs being met as early as possible.
The updated statement is still being finalised. We are hoping a further draft will be ready early next week, and we’ll share this with those who provided feedback. If you didn’t feed back previously but would like to comment on the updated draft, please get in touch.
We will share the new, finished statement as soon as it is ready.